So discusted!: I am so... - ITP Support Assoc...

ITP Support Association

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So discusted!

Doris61 profile image
2 Replies

I am so......... frustrated!!!!!!! I am 61 years young and 3 years ago I moved from Illinois to Bangor, Pa. For 3 years I have been trying to find a Hematologist that will perform the same Iron treatment I have had for 6 years. I normally get Feriheem infusions back to back 2 weeks in a row and then I would be good for 6 months.

Every doctor I have seen here in Pa says that is too strong for me. They want to give me a smaller dose and they want me to come back 6 times in a row. Meanwhile each time It cost 1500-2000. So what used to cost me about 800.00 is now going to cost me 2400 per year. We pay about 400.00 each time I have an infusion.

I feel like this is just a money maker for these doctors. No wonder why insurance companies cost so much!!!!

So then this last doctor switched my iron to the 6 treatment Iron without even discussing it with me. I walked out without getting my iron. I told him I don’t even know how my body is going to react to the new iron and if you get infusions you all know you can have bad reactions. What is wrong with this picture. I have been getting Feriheem Iron infusions for 6 years. When my Feritin would drop below 20 my doctors would give me two treatments. I am so sick of doctors not listening to their patience.

From an unhappy person!!!! So discusted!

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Doris61
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ItsRalphy profile image
ItsRalphy

Hi Doris61. It sounds like you’ve had a hard time of it. It makes me thankful to be treated in the uk.

I’ve had suffered iron deficiency anaemia on and off for 15 years. My readings have been as low as 4 but I recently found one treatment which works... I’m not sure if it’s available in us... it’s called Sytron and it’s sodium feredetate.

I used to take ferritin tablets but had terrible side effects and it never increased my iron levels. My understanding is that Sytron has been formulated for children so has less side effects and for me it works a treat.

Good luck with your treatments!

Doris61 profile image
Doris61 in reply toItsRalphy

Thank you so much I will look into it. I have learned more on this blog!!!!

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